Life's Path

Thursday, March 31, 2011


After the recent epsiode, life really slowed down.  I was to take it easy and let my body adjust as it recovered and I got my mobility back.  In all, it took about 3-4 weeks before I was back to "normal".  It took a long time for my hips to get back into full mobility and so I had a limp for awhile but other than that, everything came back in due time and it remained a mystery as to what had happened.  I just really hope that it doesn't ever happen again.

I continue to have more appointments throughout August 2009.  The ultrasound revealed that I need further investigations so I have a Saline Infusion.  We discover that I have a fibroid and will require surgery.  Hopefully this will help with my anemia problem.

I start counselling for Rehabilitation back to work.  Some things that happened at work before I left had to be dealt with before I could return to work.  I see the therapist for a couple of sessions to see if this is needed.  She confirms that I need to work through some work issues and the way that I was treated.  My rehab consultant thinks otherwise.  So goes the battle.

I restart the physio part of Rehab on August 24, 2009.  Jay, my therapist, is being very careful and cautious with me as he doesn't want me to relapse again.

A follow up appointment with the Colposcopy clinic (seriously, they need to move this clinic out of the Cross Cancer center!) and we get good news there...things look really good since my LEEP procedure.  Looks like all the bad cells are gone I should almost be done my treatment here!!!  That is some VERY good news!!

August 29 - September 1, 2009 I fly out to Kelowna for some much needed R&R at my friend's lake house.  It was a wonderful weekend of resting, sleeping (so much sleeping on the chair swing on the deck!) and soaking up the hot sun rays of the sun.  It was so good to escape the insanity of everything going on back home.

So things sort of seem back on track as far as recovering and getting some things taken care of.  But the question still remains...what is going on with my body?  Will this question ever get answered???

Tuesday, March 29, 2011

Major Relapse

The Monday morning after being in the ER for my cough, I wake up and am not doing well.  I am finding it hard to move my body.  I have to cancel my rehabilitation session for the day.  I book a massage to see if we can limber me up again.  I am unsure as to what is going on or what to do.

Tuesday morning, July 28, 2009...I wake up and I can't move.  It takes me forever to get to the bathroom and to try get myself ready.  I feel like everything is locking up on me.  I call my friend Lisa to talk about what is happening.  She tells me I need to call the Health Link and ask them what they think.  I call health link and they urge me to get to the ER.  This is just crazy.  I call Glenn at work and he comes home immediately.  We call an ambulance as Glenn doesn't know how he will get me to the car.  My joints are completely stiff, I can move with minimal mobility.

The firemen and ambulance crew come.  My hands are starting to curl in, I have lost movement in them.  It is scary for us.  What is going on in my body now??!!  I am taken to the UofA emergency room.  We don't have too wait too long before I am taken back into the examining area.  They somehow get me from the ambulance stretcher to the hospital stretcher.  We wait for the doctor...

Now I feel like I am in a soap opera.  You know, most soap opera's, daytime television, they end up being in the hospital or the show is based around a hospital setting.  I feel like this the moment the ER doctor comes in.  He doesn' look like a doctor, he looks like an actor out of Hollywood who is trying to play the role of the doctor.  Think, pretty boy.  He isn't even in full scrubs.  You know, tight t-shirt to show off his biceps which I am sure is the only thing he works, I think he works on perfecting his hair as well...when he isn't playing doctor.  Anyways...I am laying on a stretcher and can't move...back to that...

So pretty boy doctor comes in and asks me a few questions.  He does a very quick, not very thorough physical exam of my joints etc.  He says he will be back.  He comes back a little while later.  Remember how any doctor can check on all the medical history of what has been going on with me lately?  This can be a good thing and a bad thing.  So he has looked at my file and sees that I have been through numerous tests and blood work and he feels that he doesn't need to do anything.  He says that I should follow up with my doctor as he knows best about what is going on with my care at the moment.  We ask what do we do for now as I can't move.  He prescribes me morphine, which I cannot take and I tell him that.  He refuses to give me any other medication.  He refuses to do any blood work or any testing on me today.  We ask if it could be an infection taking over my body or something and should he maybe check for that.  His answer is go see my doctor. 

The problem is, my doctor is on holidays this week and the next.  Isn't that always the case?  I tell pretty boy that and he doesn't really care, just gives me the morphine prescription and tells us to have a nice day.  Yup.  How do I get off this stretcher?

Glenn goes and gets a wheel chair and somehow maneuvers me into it to take me to the car.  Again, with difficulty and maneuvering, he gets me into the car.  It is now just before lunch time.  I tell Glenn that there is no way I am getting out of this car unless it is to go see a doctor.  We drive home, Glenn grabs me some shoes, we go to a fast food restaurant for food so we can order in the drive through and then eat in the car.  At 1:00 I am going to go to my doctor's office and see the doctor that is covering for my doctor while he is away.  You see the fun in all of this!!??

With lots of patience and time, we get me into the doctor's office.  The poor doctor that is covering for mine...  He has no idea what has been going on with me and tries to catch up real quick by looking at my file and asking me questions.  The poor guy is scrambling.  He wants and needs to help me but this is out of his scope.  He orders a bunch of blood work and tells me to hang on until Dr. Boyko gets back and can see me.  There really isn't any more that he can do for me.  I feel bad for him as he is trying his best but he really is unsure as to what to do.

Glenn and I spend the rest of the afternoon getting me to the lab for blood work and then getting me back home.  The day is now gone.  When you have very little mobility, a simple task can take up most of the day.  We get me settled into bed.  Glenn has to come help me out of bed to get to the bathroom.  Glenn has to get me off the toilet as I can't do this myself.  It has been a long and trying day for the both of us.

The next day, I have a little more mobility so Glenn goes to work.  I tell him if I need him I will call.  I pray I don't have to use the bathroom much that day.  Hopefully I can stay in bed and not have to worry about getting around.  My friend comes over to visit.  She can hardly believe it.  I am totally like an old woman trying to move around and get up and down.  At least it is a little better but what does it all mean and when will I have full range of mobility again?  Rehabilitation has been suspended for 4 weeks.  Jay, my therapist, doesn't want to work on me until they know what is going on with me.  We have taken a major step back.

Monday, March 28, 2011

Rehab...and "ARE YOU KIDDING ME??"

I officially start my rehabilitation back to work on July 6, 2009.  The goal is to have me there twice a week to do my exercises and stretching and then massage and physio therapy for my back.  Jay, my therapist, is easy to get along with and he is trying to come up with the best plan possible to get the best results.  In some ways I feel weird being there as most of the client's are trying to rehab back from serious injuries and I don't have that.  In fact, we still don't know what I have!

I also get a call early July that I have to go for ANOTHER COLONOSCOPY!  I can't believe this!  They want to send me to another specialist as they feel the first one didn't do a good enough job with the first colonoscopy.  At the same time, they will also do a Gastroscopy.  Might as well do both ends while I am there.  I just can't believe that I have to put my body through that harsh cleansing process once again because they need a second opinion!  Glenn is scheduled to be away during this procedure to a coaching conference at Washington State University.  He wants to cancel his trip but I won't let him.  I have done this before and I have friends who are willing to take me and pick me up from the procedure.  I am sure that I will be fine without him and I am not letting him cancel a trip for a colonoscopy, that just isn't right!

So July 17, 2009 I have my Colonoscopy and Gastroscopy.  Everything seems to go according to plan and I spend that night at a friends house.  I remember the weekend being very hot and the weather unstable.  We had an incredible storm come through on the Saturday night.  Many trees were knocked down and buildings took a hit.  It was something I had never seen before.  The weather was off kilter.  So was my body.

Since the procedure, I cannot stop coughing.  Something must have happened when they did the Gastroscopy on me.  I cough all day long and I cannot sleep.  It wears my body down even more.  I feel the "falling into the deep black hole experience" coming on again.  I don't feel like I am in my body anymore.  My mind struggles to stay in the present.  I am so weak and can barely function.  Jay at Rehab is concerned and can't figure out what my body is doing.

10 days after the procedure I call the health link to tell them what is going on.  They suggest that I get to the ER as soon as possible as I shouldn't have this problem with the coughing this long after the Gastroscopy.  I barely remember the trip to the ER (Glenn is back home and has taken me)  The best way that I can describe how I was feeling would be like an extreme drunk.  I guess that is how I can describe it.  Nothing feels right, nothing feels normal, I don't feel like I am in my own body, I am so weak, I fight to keep my thoughts together.

I lay on the examining table and I shiver so badly.  They take x-rays of my throat to make sure there is no serious damage.  They do some blood work and continue to do some tests.  Nothing serious has been damaged but they need to get the coughing under control.  They give me a drink of something and it is strong and numbs everything from the throat down.  I FINALLY have relief.  They keep me for a little while for observation to make sure the drink keeps working.  It is a miracle drink.  They also get the blood work back and they are puzzled by what is going on.  Nobody can figure it out.  They finally send us home.  It is the first night in 10 days that I actually get to sleep.  Maybe we can start getting my body re-energized and back on track after that last 10 days. 

Oh for wishful thinking...

Thursday, March 24, 2011

Recovery and More tests

It did take some time for me to recover from all the wedding festivities.  The week or so after was a blur as my body tried to adjust to some sort of normalcy and tried to make up for the punishment that I had put it through.

And now I am back into the routine of going for tests and seeing doctors.  I have to go for an E S & D on June 3, 2009.  They are still trying to figure out all my stomach problems that I am having.  More drinks and more pictures of my Esophagus, Stomach and Duodenum.

On June 23, 2009 I have my follow-up appointment with the Fibromyalgia clinic as they want to see how you are doing since the course.  It is pretty standard.  Later that day I have my first appointment for my rehabilitation to go back to work.  I meet my physio therapist and we go through many questionnaires, range of motion testing all sorts of things like that.  My therapist (Jay) needs to know how I am doing so that he can set up a treatment plan for me.  He is a little baffled by my symptoms but is going to work something out so that we can get me back to work for August, that is the target date that they have set out for me.

June 26, 2009 I am scheduled for an ultrasound as I am bleeding lots with my monthly cycle.  They are tyring to see if I am anemic because of this and what is causing me to bleed so much. 

So there we have it, another month of things going on and trying to get the old Lisa Harper back up and running.  July looks to be an interesting month!!

Wednesday, March 23, 2011

An exciting week!

May 15-24, 2009 is like a complete whirlwind!  Nicole and Jared's wedding date is May 23rd and there is still much to be done.  Because I am off work, I offer to help Nicole with any of her last minute errands.  Nicole doesn't drive so I offer to take her where ever she needs to go to get her wedding stuff all finalized and done.

Every day we run here and there getting things done.  It is exciting seeing her get all excited and get things finalized.  I even have the chance to help her find a place for Jared and her to live...there was much to do!  I know that each day is wearing on me physically but I am trying to suck it up the best that I can so that Nicole can have the best day.  Looking back, I would do it all over again for her.  But boy, it sure did do me in.

Every night I came home just exhausted and didn't know how I was going to make it to the next day.  But somehow I did.  Thank goodness all the running around went smoothly so there weren't any disasters or anything like that to deal with.

Come the Friday, the day before the wedding, Glenn and I were very involved with the decorating at the church with my aunt.  I just kept pushing the pain and exhaustion to the back of my brain and refused to let it get to me.  There was no time for this in my life!  Everything went well, everything looked beautiful and the rehearsal went off with a bang.  We were ready for the big day.  My body was telling me otherwise.

That night in bed, I was at one of my lowest lows.  I didn't know how I was going to make it to the wedding.  My body was screaming in protest to me and it was screaming loud.  It was so bad that I looked at Glenn, and honestly, I asked him this question in all seriousness "Do you know where we can get some marijuana?  I have heard that helps people and I am in desperate need of help."  He looks at me funny cause he just can't believe that his wife has asked him this!  But that was the shape I was in, I was ready to resort to pot to get me through the wedding.  Of course, I knew that it really wouldn't happen as I don't smoke anything but when you are desperate, you mind takes you to places you thought you would never go before.

Needless to say, Glenn did not go get me any pot.  We had a little laugh over the discussion and then tried to figure out other ways to help me through the night and through the next day.  Thank goodness for an amazing hairdresser and makeup because I was so drugged for Nicole's wedding but you wouldn't know it to look at the pictures.  I just kept smiling and kept going through the day and popping pain pills like there was not tomorrow.  The wedding went off so well and the bride and groom had a lovely day!  And in the end, that is what mattered to me.  I could deal with me later.  This was their one day for them and I was determined not to ruin it for them.  I just knew that I wouldn't probably be moving off the couch for at least a week!

Phew, I did it.  But don't ask me to do anything like that anytime soon.  The body can only handle so much at one time and I got my one free pass. 

Monday, March 21, 2011

Let's get you back to work!

So you see, now that I have completed the Fibromyalgia course, my insurance company for long term disability thinks that it is time to get me back to work.  It isn't that I don't want to go back to work, that is my ultimate goal.  The problem is, I am not better, getting worse some days and we still don't know what is wrong with me.  That is why I don't feel it is time to start thinking about me going back to work.

I meet with the Rehabilitation consultant on May 12, 2009.  She comes to my place and the meeting is for 9:30 AM.  She shows up at 9:00.  Oh well, she can see me with my hair still wet from the shower, bed unmade etc.  It is an interview like session...can you do this, can you do that, have you tried this, have you tried that.  Some of it seems silly, some of it seems legit.  I don't get warm fuzzy feelings from this lady.  You can tell she is by the book and her job is to get me back to work and she will do whatever it takes to make that happen.  I do stress to her that we are still working on getting my situation figured out.  She doesn't really care, she really likes the Fibromyalgia diagnosis and is content on working with that.  She doesn't get it.  But then again, I am getting used to that.  The meeting finally wraps up and she will get back to me as to what my plan will be as far as getting rehabilitated.  She sees me back to work by August.  Let's hope she is right!

After that meeting, I need a nap.  That was an emotionally draining meeting. 

Friday, March 18, 2011

Fibromyalgia Clinic (May 4-6, 2009)

Here it is...I am going to be spending the next 3 days in a room full of people with Fibromyalgia.  When I first get there it is kind of depressing...everyone seems to be 50+ and I am the young one in the bunch.  Do I really belong here?  Thankfully just before we go into session, another young lady joins the group and I don't feel so isolated.

The purpose of the clinic is for you to learn about your diagnosis, learn how to deal with it, get nutrition and fitness tips etc.  Remember, I don't think this is the right diagnosis for me but I have to attend the session anyways.  If anything, it is good to get out of the house for 3 days and to interact with people.  Information is always good, regardless, so I go in with an open mind and participate in the sessions over the next 3 days.

The thing that I really don't like about the sessions is that it almost becomes a contest with the group as to who's pain is worse, who has suffered the most etc.  It can really bring the group down.  The administrator's try to keep the group from having the conversation go that way but it is inevitable in a group setting like this.  It is sad to see so many people suffering from ailments that hinder their everyday life.  It is sad to hear of people who don't have the support system that I have...their spouses don't support them or understand what they are going through, their work places aren't treating them well etc.  It makes me thankful that I have such a great support system and that I have a job with benefits so that I can go on disability so that I can get myself better.

In the end, the 3 days weren't all a waste of time.  I was out, I was getting some good stretching in, I met a potential new friend and I came away more determined to get to the bottom of what was ailing me. 

Thursday, March 17, 2011

April 2009

April 1, 2009....besides being April Fool's Day, it is now the official day that I am on long term disability.  Up until now, I have been on short term disability with my work.  So today is kind of a big day.  Being that I am in a "temporary position" at work, I can only be on long term disability for two years.  After that, if I am still not able to work, I am on my own.  But seriously, I am not going to need the two years am I??

April was a slow month health related.  I only had 2 appointments with Dr. Boyko and those were most likely dealing with the paper work for my long term disability and follow-up blood work to keep monitoring things.  It was kind of nice to have a month were I wasn't running every week to another appointment with a new doctor.  I spent some much needed down time as personal life is getting a little more hectic.

Glenn's daughter Nicole is getting married in May, so we had a couple of days that were related to getting things ready for the wedding, but nothing too bad that didn't end up putting me on the couch for days at a time.

The only other appointment was getting assessed at the Rehabilitation unit at the UofA hospital in preparation for the Fibromyalgia clinic in May.  Things are all quiet for this month...I guess it was the calm before the storm...

Tuesday, March 15, 2011

Tests, Parties and a bogus diagnosis

After my colonoscopy, I went back home to the farm for a few days.  It was nice to get away from the phone calls and appointments and to get out of the city for a break.  I spend my days with my sister-in-law and my nieces and nephew.  I feel bad because I don't have the energy to interact with them as I wish I could.  The little ones want to play and I end up napping.  Thank goodness they can all sit on my lap and I can read to them.  I hope they don't remember Auntie being like won't be a fun memory for them if auntie just sits in the lazy boy and observes them playing instead of playing with them.  But it the end, I think the few days away were helpful and needed.

On March 24, 2009, I go for my Small Bowel Follow Through X-Ray.  It is a painless procedure.  You drink crap and if I remember correctly for this exam, I had to chew on these "pop rock" type things to cause a fizzing action in my stomach.  Then I had to literally flip myself around on the exam table a few times so that they were assured that it was all mixed up in my system.  Who knew gymnastics would be a requirement for this exam!  They take a bunch of pictures of my small bowel and I will get the results next week.

March 26 and 27th we had two big nights out.  The first night we went to the Jubilation's dinner theatre with a group of friends for a fun night of the production "Corner Gassed"...a spoof off the Canadian TV show "Corner Gas".  It was nice to get out and to interact with people, have a good meal and to watch a funny production.  As fun as it was, by the end I was done.  Again, exhausted, cold, headache, diarrhea, sore, massive tingling in my face and hands etc.  But it was good to get out and try act normal for an evening.

The next night we were celebrating our friends 50th birthday.  The party was in a home setting which was nice as I could stay seated most the night and interact with people that way.  My friend and I like to have a glass of champagne for special occasions and when she asked me if I would share some champagne with her in honor of her birthday, I agreed to a very small glass as I remembered the New Year's Eve experience.  It was more so I could have a little toast with her.  I had a few little sips of champagne and didn't really think anything more, it was just a couple of sips.  About 10 minutes later as we were visiting, people started to look at me funny.  They started asking me if I was okay.  Other than the usual symptoms, I didn't feel anything different or new.  I asked them why they were asking me this.  They brought me to the bathroom so that I could look in the mirror.  My face had exploded into some kind of bright red rash, something I had never seen before.  Great.  We took pictures so that I could show my doctor at the next appointment.  We didn't know what to do.  Luckily, it calmed down with some time but seriously, what was that all about?!?

On March 30th, I went back to see Dr. Cadili (Gastro specialist) for my follow-up appointment to go over the colonoscopy biopsy and Small bowel follow-through x-ray results.  Everything came back normal.  Again, I remind myself that this is a good thing.  But it is so hard to hear when you want to know what is going on with your body and to fix it.  I try to stay we go again.  In the end Dr. Cadili tells me that I most likely have IBS (Irritable Bowel Syndrome) and I should be careful of what I eat.  Be careful what I eat...if he only knew what I try to avoid (diary etc) to no results.  Again, I have a hard time stomaching that diagnosis.  It is another one of those ones that they throw you in as a catch all because they really don't know what is going on with you.  I tuck the words IBS into the back of my brain in the category "Filed, never to be looked at again"

Okay April is upon us...what will that bring about for me?

Monday, March 14, 2011

Tired...oh yeah and a Colonoscopy!

I know that I have been mentioning how exhausted I have been but maybe I can put it into a little better perspective.  I sleep most of the day and of course at night.  I am probably averaging at least 16 hours a day of sleep.  And I am still completely exhausted and feel like I need more sleep.  It has come to the point that I go to my Nanny's house when Glenn has the kids.  Why do we do that?  Because I am usually sleeping and they don't want to wake me.  So on Saturdays, to be fair to Glenn and his time with the kids, I go to my Nanny's, visit with her and then, you guessed it, go to sleep in her guest bedroom until it is time to go back home.  People don't understand this though.  They think that I am avoiding Glenn's kids but Glenn and I have talked about it and this is for his benefit so that my illness doesn't come between his time with his kids.  We try to make people understand but they don't get it.  And really, I don't care at this point as we are trying to do our best to function as a family the best we can under these circumstances.  But enough about that...I have something else I have to prepare for....

March 18, 2009 I am scheduled for my first ever Colonoscopy.  Am I not to young to be going through things like this!?!  Yet, I understand why and that is why on the day before the procedure I am staring at these concoctions on my kitchen counter and knowing that they have to enter my body.  Literally, nobody can warn you enough about the day before the procedure.  Seriously.  I have to drink 4 liters of some pretty disgusting stuff, to get rid of the disgusting stuff that is in my colon, intestines etc. 

Now, if you have never had this procedure done, make sure you have clear access to the bathroom and that if anybody else is in the house with you, make sure that they understand fully that you need clear access to the bathroom at any given SECOND!  Literally.  Once you start drinking the stuff and it starts moving and shaking your bowels, you will pretty much be situated on the throne for the rest of the day and night.  I kid you not.  Even when you think that there could possibly be nothing left in the world for you to get rid of, you will continue to empty out well past that point!

When Glenn got home from work, I told him that if he needed to go to the bathroom that night, he was going to have to go find a bathroom somewhere else.  He doesn't really believe me until he sees me do the 20 yard dash to the bathroom in under 1 second (kid you not!).  When you gotta go, you gotta go NOW!

But seriously, that is the worst of it.  The day before the colonoscopy is the worst.  You have nothing to fear about the colonoscopy itself.  You get to the hospital, change into your gown, you get on the exam table, they put you to sleep and you wake up and don't even know that anything has been done...that is until they give you the pictures that they took while looking around in there as a souvenir.  Piece of cake.  You walk out and go home, no side affects whatsoever.  Okay, there is a good side probably weigh about 10 pounds lighter as you have nothing in you! 

So please, if you ever get told that they want to do a colonoscopy, don't fear it.  Fear the day before.  No don't fear it, just be very prepared and make sure the rest of the household is prepared as well that they will have no access to the bathroom.

There, I feel like a big girl now, I can say I have done and survived a colonoscopy.  Good news is, there is no Chron's or Colitis.  Bad news is, we still don't know what is going on.  Maybe the next test on the 24th will give us some answers...

Friday, March 11, 2011

March 5, 2009

So remember the lovely Rheumatologist that I saw back in November??  Dr. Davis??  Today is my follow-up appointment with him.  I figure it is a waste of time to see him as my regular doctor has already given me the results of my bone scan etc. but off I go.

Seriously this guy has the worst bedside manners.  Again, he barely looks me in the eye.  We go over my bone scan, which there is nothing to report.  He has no idea what is going on so he throws out the diagnosis of Fibromyalgia out there.  Now please, don't get me wrong.  I know that there are people out there that have this diagnosis and I don't downplay it.  But this is not the diagnosis for me.  I know it for a fact.  He has thrown this at me as to lump me in the category of unknown and so let's give you a title.  Even though I don't accept it to be true, part of me has to play the role of it because I am on disability.  I am scheduled to go partake in a 3 day course for Fibromyalgia patients.  I have to attend it because I am on disability.  Not doing so could jeopardize my status as it would be seen that I am not trying to get better.  So I have to have the title to my name of this auto immune disease. 

But it is not going to define me and I am not going to give up the fight to find out what is really going on in my body.  Even though this doctor has given up on me, I am not giving up on me.  I know my body too well and I will not go down without a fight.

Wednesday, March 9, 2011

The rest of February 2009

So now that I am off work and don't have to worry about that any more, I am back to focusing on getting better and running to what seems like a million appointments.

We get the results from the MRI and the Echo cardiogram.  MRI is good, nothing to report there and that is good news.  Echo cardiogram reveals that I have a mild "leaky" heart.  One of the valves doesn't work so well and some blood leaks back into the system.  Nothing to be too concerned about at this point but we will have to keep an eye on it over the years to make sure it doesn't progress to something worse.  Glenn now sings the song "Don't break my heart, my leaky leaky heart..."  Yeah, trust him to make humor out of everything!

I have been called back to the Colposcopy clinic, the cells are progressing faster than they like and so I will have to get a more invasive procedure to remove all the bad cells in my cervix.  This is called a LEEP procedure.  "LEEP uses a thin wire loop electrode which is attached to an electrosurgical generator. The generator transmits a painless electrical current that quickly cuts away the affected cervical tissue in the immediate area of the loop wire. This causes the abnormal cells to rapidly heat and burst, and separates the tissue as the loop wire moves through the cervix. This technique allows your physician to send the excised tissue to the lab for further evaluation which insures that the lesion was completely removed, as well as allowing for a more accurate assessment of the abnormal area."  So I have this procedure on February 25th and I am glad once again that we were on top of this so that it didn't turn into the big "C" word down the road.

I am also booked in to see a Gastrointestinal Specialist on February 26th.  We don't know why I keep having the diarrhea constantly and we still haven't found out where the inflammation in my body is so we have to rule out Chron's or Colitis.  I meet Dr. Cadili late in the day on the 26th and he immediately books me in for a Colonoscopy and a Small Bowel follow through x-ray in the coming weeks.  Yeah, I get to go for a Colonoscopy...but I will deal with that in my next post!  There we have it, another month gone and we still don't know what is going on.  But we are still working on it...something has to click and give us the answer at some point...right???

Tuesday, March 8, 2011

More tests and Back to Work

2 Days after getting back from Mexico I am scheduled for my MRI on January 30, 2009.  MRI's are pretty standard...lay perfectly still and it is very noisy.  At least it is done and we can see if anything is going on and rule out other things.

I am getting a lot of heat from work.  They don't understand how I could go to Mexico, but I can't come back to work.  So I try to go back to work.  I started back on February 2, 2009 starting at 4 hours a day for the first week.  It is hard being back.  Besides playing major catch up and cleaning up many messes that were left from my co-workers, physically I am just drained being back at work.  I focus on trying to get my tasks accomplished and just get through my 4 hours.  I pretty much stay to myself.  I have to.  I am fighting off physical ailments to get through the hours and my head is spinning with trying to keep it all together.  It is extremely difficult.  But I am trying to make a go of it.  I gotta earn brownie points for trying...right???

I also get scheduled for an Echo cardiogram of my heart to make sure that the inflammation isn't in my heart and that there are no problems there.  This happens on February 6, 2009.

After my first week back to work, I literally crash for the weekend.  My body is extremely unhappy with me that I am pushing it so hard.  I am just trying to function normally.  But it is seeming to be too much for what I am dealing with (and we don't know what we are dealing with yet!)

Monday February 9th, I try a full day of work.  This nearly kills me.  I guess I am stubborn and trying to prove mind over matter but my body is clearly not happy with me.  I know that this pace is not going to last long.  Too much is going on in my body.  Tuesday February 10, I literally drag my butt to work.  I feel like I am in a fog, it takes all of my energy to focus, to push all the physical stuff to the back burner and try to function.

Sometime that day, my supervisor wants to meet with me to see how things are going.  So we meet in a meeting room to have a private chat.  She asks me how I think things are going and I tell her it is extremely hard but I am trying.  She points out that I seem kind of distant and I agree, I tell her that I am dealing with so much that I just am trying to focus on the work and get things done.  She says that she needs a note from my doctor saying that I was cleared to go to Mexico as she doesn't believe that I was.  She asks me if they know what is wrong with me yet and I tell them that they are still working on it, that I am still getting tested etc.  She then looks at me and in all seriousness asks me "If they haven't figured you out by now, maybe they should look at your mental state."

Did she just really ask me that?  So many thoughts and words run through my head.  I literally have to bite my tongue.  If I say anything right now, it will not be good.  I just look at her, grab my things and say that the meeting is over.  I walk back to my desk and I am just furious.  I just focus on getting through to the end of the day. 

Wednesday morning February 11, 2009, I call into work and say that I won't be able to make it in that day, things are too rough.  I am physically shutting down.  My supervisor calls me back and I can't even take the phone call.  I don't dare take the phone call.  Who knows what else is going to be said to me.  The phone message is not professional and she doesn't understand why I am not coming to work today, I need to give a full explanation as to why I am not there.  I phone my doctor and make an appointment with him for right after lunch.  I call Glenn and ask me if he can come and take me to my appointment, I know that I am going to need him.  I phone my work back at lunch time so I can leave a message and tell them that I am not in because I am sick.

I go to my doctor's appointment with Glenn and I tell him how the last week has been at work.  My body is not responding well.  I feel myself getting worse and worse.  I tell him about the conversation with my supervisor the day before.  My doctor immediately starts typing away on his computer.  He hands me a note saying I am off work indefinitely.  He is mad.  He says they have no right to treat me like that and he will not let me go through that when I am going through what I am physically.  He is mad that she has belittled the medical profession and that he hasn't figured out what is wrong with me.  He loves how everyone thinks they know what is going on when they know nothing as to what is going on.  He reiterates that it will take time, that we have to check things and rule things out but we will get to the bottom of it.  Did I mention that I love my doctor?

Glenn and I then go straight to my work from the doctor's office.  We walk in together (I feel like I need a body guard, I don't trust what they will say or do to me) and I walk straight to my supervisor's office and hand her both letters from my doctor, the one for Mexico and for being off work indefinitely.  I don't even think I say anything, Glenn is guiding me to my desk to grab a few personal belongings and so that we can get out of there.  I am done.  I don't know when I will be back, but it won't be anytime soon.  I need to be off work, I need to be left alone, not harassed, and I need to get better.  I need to get better.  This is the ultimate goal.

I walk out the door with a few personal things, with my man by my side and I feel a weight lifted off my shoulders.  Glenn takes me home and I crash.  It has been a very emotional few days.  It has been a very physically challenging week.  I couldn't even tell you how long I slept that day, but I know that it was hours because when I woke up, Glenn was home from work and he had been for a long time.  Here we go...what is going to happen next?

Monday, March 7, 2011

A New Year, A New Start?

New Year's Eve...a time to reflect on the past year and to look forward to new things ahead.  I am ready to say good-bye to this year.  Things have got to be better for 2009.

I am starting to get harassed from work as to when I am coming back.  How can I possibly know this answer?  It is my goal to be back to work, I am working on getting better and figuring out what is wrong with me.  What part of the doctor's note "Off indefinitely" do they not understand?  I try to ward them off that as soon as I know, they will know.  The last thing you need when you are sick is someone harassing you.  Stress does nothing good for you.

New Year's Eve we go out for supper at our usual spot Moxie's.  It is a tradition that I never cook the last meal of the year (not that I have been cooking or eating much these days but that is besides the point).  We come home to a quiet night of watching New Year's Eve festivities on the tube and try to stay up for the countdown.  I pour myself a small glass of champagne.  After a few sips, I have some sort of reaction.  My face looks like I have broken out into some rash and chicken pox looking.  It is just crazy, only a couple of sips.  My body is rejecting it or reacting to it and we have no idea what is going on.  Happy freakin New Year.

Now I have to back up the story a little bit.  About the time I started to not feel well, Glenn and I were in the planning stages of a trip to Mexico for the end of January.  We saved all year as we haven't had a real relaxing vacation since our honeymoon.  We had booked it for January 20-27th in the Mayan Riviera.  We were so looking forward to this getaway.  Now we don't even know if I will be able to make the trip.

I go to Dr. Boyko on January 8th and explain to him about our trip.  I told him that I had no idea I would still be feeling this way by now and am worried about loosing all our money and not going on the trip.  We have a great discussion and at the end of the appointment, my doctor clears me to go to Mexico.  He figures that the time away would do me good, the better weather will be nicer for my body and as long as I don't do any adventures while there (as if I could even think about it!) he didn't see why I shouldn't go.  Take my med's and get plenty of rest in the sun, away from phone calls, doctors and appointments.  I make sure that I get a note from him okaying this as I know I will need it in the future.  I can now relax.  We will be smart and careful but we can go to paradise for a week.

Let me tell you, I didn't know if I would even make it on the plane.  The morning that we were leaving, on the way to the airport the nausea kicked in real good.  I thought I was going to puke all morning and I wasn't even in the air yet.  (Nausea was one of the symptoms that I have been dealing with, gingerale is my best friend, I should have bought stocks in it!)  At the airport we do everything that we can to get the nausea under control.  The plane ride was interesting but no disasters happened and we were now in paradise. 

Ah, humidity and warmth.  You do something to the body that is indescribable!  My body is happier in this weather.  The pain in my body has virtually disappeared.  Probably being away from all the stress at home helps too.  We spend the week literally, on a beach chair, on the beach as long as the sun is up.  So many naps in the sun.  So nice to just soak it all in and let my body rejuvenate.  The warm Caribbean water is wonderful to float in.  I never want to leave.

There are isn't all paradise...I am still sick.  Running from the beach to the bathroom is always a fun time (I am being very careful as to what I eat, but remember, diarrhea is a way of life for me.  It is daily and often.  It isn't happening just because I ate something or got a bug in Mexico).  Even though I am resting all day, I am still always extremely exhausted and go to bed early every night.  Good thing Glenn needs the break or this would not be a very fun time for him. 

Towards the end of the trip I cannot walk on my left foot.  The swelling in my foot is huge and is going up my leg.  It is also bruised like looking and is extremely painful to touch or do anything.  I can barely put my flip flop on let alone any other shoe.  We are unsure if we should see a doctor or not.  I haven't done anything to it like step on something, fall etc.  It just started to happen.  We text my mom (she has medical training) to tell her what is going on.  She asks if it is hot cause that could show signs of infection.  It isn't hot, just very swollen and painful.  Of course she isn't there to see it but is happy to hear that it isn't hot.  We decide not to see a doctor but to bandage it up and keep icing it.  When I got back home and showed doctor the pictures of my foot he figures that I got cellulitis.  Story of my life.  Good thing it wasn't anything else or didn't get worse.

We leave paradise feeling relaxed, tanned etc.  But reality is about to hit us soon.  I am still not better and the journey continues to finding out what is wrong.  We are thankful that we have had this time away together.  What awaits us when we come home??

Friday, March 4, 2011

Christmas 2008

"I've ruined Christmas!"  This is what I tell Glenn on the phone.  I have just got news that I have to go for my CT Scan on December 24th.  We always have Glenn's kids on Christmas Eve and now I have to spend the morning in the hospital getting my CT Scan.  I hope that the kids understand that they will have to wait to get the call as to when they can come over, when we are home from the hospital.  Ugg, I hate this!

So off we go the the University of Alberta hospital for my CT Scan of my abdomen.  They want to see if the inflammation is in any of my major organs.  We get there bright and early.  We register and then wait in the waiting room.  And we wait, and we wait.  Everybody that has come in after me has already gone.  I approach the desk and ask when it is my turn.  Somehow they forgot about me.  Hello, we have Christmas to celebrate, this is not a time to forget about me.   lol

I finally get called back to the prepping area and I have to get an IV in me...I HATE IV's!!  Take all the blood you want from me, give me needles but please, do not give me an IV.  They are extremely painful for me.  The very thought of it can make me cry.  It is NEVER a good experience for me when I have to get an IV.  Hopefully one day I will grow out of this!

After the painful IV, I then have to drink this HUGE, I mean, HUGE container of goop and it kind of tastes unappealing.  I have to drink it in a certain amount of time and then wait for the actual CT Scan.  I drink/choke the concoction down.  And then I wait.  Glenn has to wait for me in another section.  Finally I can go and wait with Glenn.  Now I get escorted into the exam/theater room.  I am placed on a table that has a machine that will go over my body and take pictures.  They get you all ready and then they inject something into my IV and warn me that I will feel like I am peeing my pants, but they tell me that I am not.  Well, they were right, you get this crazy warm feeling over you and you literally think you have peed your pants!  It is the weirdest thing ever!  I tell the nurse I MUST have peed my pants, that felt too real.  She assures me I have not.  That is just beyond ridiculous.  At the end of it all, I realize that I have not peed my pants and laugh at how that stuff can make it feel so real.

After them doing my pictures for the scan, we can finally go home.  I am tired.  I need to drink plenty of fluids to try get rid of everything they just put in me this morning.  But it is Christmas and I have to try and get through the day.  I get through it but I don't remember much of it.  I am tired, trying to stay festive and it wouldn't surprise me if at sometime throughout the day I took a nap.

Christmas day we spend the morning at home, just Glenn and I and then we head to my families farm for Christmas afternoon and dinner.  I try to enjoy everything as much as I can.  I have good moments and bad moments.  But in the end, we made it through Christmas and everyone is happy.  Hopefully next Christmas everyone can be happy AND healthy!  Merry Christmas!

Thursday, March 3, 2011

I need an assistant!

December 16th, 2008 I have an appointment with a Neurologist, Dr. Witt.  He is a very thorough doctor and asks a million questions and then does an extensive exam on me.  He hums and hahs a lot but in the end he is pretty darn sure that I don't have anything neurologically wrong with me.  He rules out MS and anything like that.  He is concerned with my headaches though so he orders an MRI just to make sure that he hasn't missed anything.  He sends me off with a statement I will become all too familiar with..."There is something definitely wrong with you but I am not sure what." 

I get home from my appointment and I have a message to call Dr. Boyko's office saying it is urgent.  I don't get the message until after his phones at the office are turned off for the day.  I do get rerouted to his on call line and I tell them I had an urgent message from my doctor.  The lady on the other end says I should wait and call the office back tomorrow during regular office hours.

The next morning at 7AM I get a phone call from Dr. Boyko personally.  He is wondering why I never called back and I tell him that I tried and what I was told from the on call receptionist.  He is not happy with the on call staff, I should have been put through to him.  My potassium levels are dangerously low and I needed to start on potassium like yesterday!  He tells me he is faxing my prescription in to my pharmacist and that I should get the pills immediately.  I also need to do more follow up blood work as they have to monitor my potassium levels...getting too much can cause problems for the heart.  So I need to routinely get blood work to make sure I am within the safe levels.  Question is, why do I need this potassium?  Where am I losing my potassium?  It doesn' make sense yet.  I am only 33...potassium is something that older people take.  Doctor now has to figure out where my potassium is getting "leaked" in my body.

I am also scheduled to see an Internist.  December 18th, 2008, I meet Dr. Duggan at the University of Alberta hospital.  I now have my own "Dr. House"!  These are the guys that handle the tricky situations in the medical field.  Again, I have an extensive interview about my health history.  Thank goodness for technology...he has record of every ER visit I have had in my life, every hospital visit, surgery, blood work, testing etc.  Some things I had even forgotten about and man, there was a lot to talk about.  Another physical exam.  He is concerned and puzzled.  Of course he wants to send me for more blood work.  He is happy to see that I have a CT Scan coming up and that I have seen a neurologist with an upcoming MRI.  He is concerned about many things but can't put his finger on anything just yet.  More test results and maybe some answers will come to him.

With all these upcoming appointments and procedures, I feel like I need to hire an assistant just to keep me organized.  I am the type of person to handle this stuff but with my health the way it is, I am sure I am going to miss something with all the phone calls of go here, do this etc.  Thank goodness for calendars! 

Wednesday, March 2, 2011

December 8-12, 2008

Monday December 8th comes around and I am not better.  I have to call in to work sick again.  I am advised to go see my rheumatologist, but he is out of the country.  I go see the Rheumatologist that is on call.  Dr. Russell turns out to be a very kind older man who does a much better job than the other doctor who is now vacationing overseas.  He listens to what is going on, checks me out fully and orders me off work indefinitely.  He also orders a CT Scan of my abdomen area so that we can check out that nothing is inflamed in that area which is full of vital organs.  I leave the appointment relieved, I have been heard, more testing is coming up and I don't have to worry about trying to get to work in the next little while.  I can focus on giving my body the rest that it seems to need.  I can try and get better instead of trying to focus on trying to function through the day at a normal pace.

I also receive news that week that Glenn's doctor will see me on Friday, December 12th.  This is a huge answer to prayer that Dr. Boyko is going to take me on as a patient.  Glenn and I go to the appointment together on that Friday afternoon.  Dr. Boyko is a wonderful doctor.  He is great at what he does and if it is out of his scope of expertise, he isn't afraid to admit it and to find out where he can get the help that he needs in working with his patients.  He doesn't just prescribe an antidepressant because he doesn't know what else to do for you.  He will keep searching for answers until an answer is found.

One look at me and he knows that I am very sick.  He has reviewed all the blood work and test results that I have had to date.  He agrees that there is something very wrong with me.  He takes my hand, looks me in the eye and tells me that "We will get to the bottom of this."  That news alone is like I just found the golden ticket.  This is a doctor who has heard my story, who believes and knows that something is wrong due to the findings that they have so far, and who will not quit on me until the final answer is found.  Glenn and I both feel like a weight has been lifted off our shoulders and that we know we will see the light at the end of the tunnel.

Of course, I am sent for more blood work.  I don't mind though, whatever it takes.  Poke me, prod me, use cameras, x-rays whatever, let's get this figured out because I want the old me back.  The healthy me.  The one who walked to work and back 19 blocks one way.  The one who worked out at lunch time.  The one who gave her all at work for the greater good of the team.  The one who enjoyed life.  The one who would continue to stroke things off her bucket list.  The one who could be a wife to her husband again.

Tuesday, March 1, 2011

December 1-7, 2008

I am really getting sick.  But I think you get the picture.  When I eat anything, 10 minutes later I am in the bathroom.  We time it so we know.  I can barely keep anything in me.  I am losing weight like crazy.  I can barely keep my eyes open from exhaustion.  I feel like I have left my body.

I get called back to the doctor's office for my blood work results.  I refuse to go back to my doctor so I see another doctor in the same office.  (I do this until I can get in to see Glenn's doctor)  Things are getting worse on paper but they have no idea what is going on.  This doctor recommends that I see a neurologist to deal with the headache and neurological disorders that I am having.  Maybe I am developing MS??  This doctor orders some more blood work.  I might as well start putting a tap on my arm so that they can have easy access to my blood!

I also go to a Naturopath doctor on December 2nd.  She is amazing.  She goes over my whole health history with me.  She has a feeling that my adrenal system isn't functioning properly.  She needs more time with me and more tests.  I hope that I can get back to her.  She at least gives me a glimmer of hope and assures me that she will help me.

December 4th I am too sick to go to work.  December 5th, same thing.  At about 8:30AM I know that something is seriously wrong.  I can barely make it to the phone to call Glenn.  I need him to come home and to take me to the ER.  I feel myself slipping away, I am not myself anymore.  Glenn immediately rushes home from work and takes me to the U of A hospital Emergency room.  As with all emergency rooms, the wait time is long.  I don't remember much of it though.  I am kind of in and out of it.  I can't keep anything in me.

Once I get back to the examining area they start running tests on me.  There are concerns but they don't know what is going on.  They do know that I am dehydrated and that my potassium levels are dangerously low.  I am hooked up to an IV for hours and they pump me full of things.  Glenn is able to leave, go home get something to eat and make many phone calls to worried family and friends.  I barely even know that he is gone as I am so out of it.

Late that night, with no clear answers, they decide to send me home.  I am instructed to go on the "BRAT" diet to help with the diarrhea.  BRAT stands for Banana, Rice, Applesauce and Toast.  I am apprehensive about leaving the hospital as I haven't had anything to eat and don't know how the diarrhea will be.  I thought that they should at least tried to feed me there and see how that went.  They figure that I will be okay now that they have given me all these IV's. Glenn picks up the ingredients that we don't have on the way home. 

As soon as I am home, we try a banana and toast.  Like clock work, 10 minutes later I am back in the bathroom.  I am not better.  The more we keep trying with foods (not only to try but to get some nutrients in me) the more I end up in the bathroom.

Luckily my good friend Lisa came into town to visit us.  She has had health issues of her own and it was so nice to have her to talk to about my frustrations and for her to give us some of her knowledge.  She recommends that I try Boost drinks so that I can at least get some nutrients in me.  I wish I could have enjoyed our visit more.  But I think it was nice for Glenn to have her around to help him out and to give him some advice as he walked through this with me.  Lisa has remained an integral part of my health journey.  I love ya and thank God for you so much Lisa!!

We try and make it through the rest of the weekend.  Hopefully Monday will be a new start and that I will be able to start eating again.  I have to, I think I have lost 20 pounds now.  Not the way you want to lose weight, believe me.